Acute Undifferentiated Leukaemia (AUL)

Hi again SyrenStar ......... I have had a look for AUL through the site and can't find any posts about it ........ but the drugs are often mentioned..... so let's see if anyone is around to pick up on your post.

I know the challenges well as my type of Lymphoma is 7 in a million.

Azacitidine & Venetoclax is often mentioned in other posts so you can put Azacitidine & Venetoclax into the search tool  near the top and have a look at older posts and as always you can hit reply to any post.

For reliably information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

Always around to chat.

Thank you Mike. I will have a search through the other posts on the forum and also on Leukaemia Care UK as you suggested.

Hi,

I'm 38f and was diagnosed with AUL in September 2023 after a miscarriage and no symptoms i was aware of despite having 83% blasts. I've had Flag-ida, blinatumomab and am currently on my 2nd cycle of Azacitidine and venetoclax. The first 2 types of treatment didn't reduce the blasts by much and my bone marrow biopsy from my first cycle of Azacitidine and venetoclax didn't show that my blasts were reducing however they said that it wasn't a great sample.

My most recent bone marrow biopsy has been sent off to another hospital to see if I've got something more rare than AUL.

It's awful getting the diagnosis of cancer nevermind something that is extremely rare where there is no treatment plan the doctors can say "we'll give you this type of treatment and it's got x% of working", it's more like we'll treatment it like it's either AML or ALL and hope it works.

On top of that, for my age range it's even more rare. 

There are others who are going through the same type of treatment so worth looking at AML or ALL support groups.

Hope your dad is tolerating the treatment OK. With me I needed to take the nausea medication whilst getting Azacitidine jabs and always moisturise the area of the jabs and use cools packs will help. I'm also suffering with fatigue with my 2nd cycle so plenty of rest helps.

Hi Melonmc 

I was just thinking of you and wondering how you are doing. I feel bad for not replying to your message when you posted it originally.

Unfortunately my dad is receiving palliative care now. 

The first bout of treatment with Azacitidine & Venetoclax in Spring/Summer 2024 was a success in getting him to remission and a Stem Cell transplant was scheduled for December 2024, but unfortunately his AUL returned in November 2024 before the transplant could take place.

A refactory leukaemia treatment (Gilteritinib) was then used to target a specific cell mutation causing his leukaemia but unfortunately this was unsuccessful and the leukaemia remained.

I attended a meeting with my dad's consultants on Tuesday this week and was informed there were no more treatments available and he would be put on palliative care at home; all treatment was withdrawn from Wednesday. He is now receiving care at home and arrangements are being made to move him into a hospice soon.

I hope your AUL journey has been a more positive one. At half my dad's age, I'm sure your prognosis will be much more positive. I was reluctant to post this but wanted to share honestly what has been happening these past few months.

Sending you all the best wishes xx

Hi again SyrenStar and I am sorry to hear how things have developed with your dad.

There are practical and emotional challenges in supporting your dad and indeed yourself when in palliative care so you may benefit from joining and posting in our……

   Supporting someone with incurable cancer

……. support group where you will connect with a wide range of members navigating the exact same support challenges,

((hugs))

Hi SyrenStar,

I'm sorry to hear about your dad and hope he is being looked after and not suffering too much.

I'm doing alright. I had my stem cell transplant in August and still recovering now. Unfortunately I still have a tiny bit of leukaemia left in my bone marrow but I've hade a recent bout of Graft versus Host Disease of my liver which put me back in hospital for 9 days. As the donor system has been active, it's hoped that has killed off the last remaining cancer cells. I've got a bone marrow biopsy next month to confirm. I'm trying to remain positive and looking forward to finally being 0%! If its not down to 0, there is a plan B which is reassuring. 

The stem cell transplant was alot tougher than I initially thought. I was warned how tough but you don't realise how hard it will be until you go through it. 

My journey is definitely a marathon!